11 replies to this topic

[LivingWellWithCML]

Hi everyone,

I'm still very new out here (and newly diagnosed), so I'm trying to avoid posting questions that have already been hit on this forum in the past.  I saw some good content about this topic back in 2009, but I was wondering if anyone has gone through a --recent-- switch and what your experience was.  I have really good coverage at the moment (thankfully) with a major carrier who is covering my initial Gleevec prescription, but I might have to endure a carrier switch within the next 12 months - this is already causing me some financial anxiety!

Some key questions (but I'm sure there are more to be considered):

** Are all of the major carriers providing reasonable coverage for the targeted therapies?  For example, my carrier is charging me a $60 co-pay for a 90-day 400mg supply of Gleevec.

** Are major carriers (e.g., the ones that are typically engaged with large employers) covering new employees who are already diagnosed with CML and taking targeted therapies?  Are folks seeing any pushback or outright denial of coverage for this scenario?

** Any feedback on carriers that are supporting small businesses (~ 2 - 50 employees) and how they are responding to new employees' coverage?

** Does anyone know if the new health reform law(s) impact a carrier switch for CMLers re: pre-existing condition?

I would appreciate any feedback folks have on recent experiences dealing with this.

Thanks so much,

Dan

[Susan61]

Hi Dan:  I can only share what I know.  As long as you go directly into your new insurance from the other insurance with no lapse in coverage, they just pick up where you left off in most cases.  I have my insurance through my husbands job.  We had Cigna, and then the company switched to Aetna.  I pay $80.00 for a 90 day supply of my Gleevec.  At one point where my  husband was leaving one job, but not starting with the other job for 9 months we had to get onto COBRA immediately which cost us a lot of money until we got onto the new insurance with his new job.  We just never let our coverage lapse.  The COBRA was costing us over $800.00 a month for 9 months.  It was very rough on us, and we could not afford it.  Luckily we took the money out of my husbands retirement fund from his previous job.  I am one of those who always plans ahead when I can.  These insurances can drive you crazy.

Someone else might have more information to help you out.

Susan 61

[Susan61]

I forgot.  As long as you are going from one insurance directly into the other one, there is no problem with regard to pre-existing conditions.  It does not matter if you are a new employee either, but this might be where we had to get the COBRA because I believe it was a 90 day new employee before they qualified for the insurance.  Do not quote me on that.  Hopefullly someone else here has had to deal with this.

[Marnie]

Hi, Dan. . .Be ready for lots of hours on the phone.  My school district switched carriers a year after my diagnosis.  The initial paperwork involved with getting pre-approval for Gleevec was a nightmare with my doc's office and the insurance company going back and forth chasing phone calls.  So when I learned that we were going to switch carriers, I did lots of work up front to be sure that all of my ducks were in a row.  Many, many phone calls between doc's office, insurance company, and mail-order pharmacy.  Letters typed and sent to the insurance company.  Finally ended up having to take a day off of work so that I could sit at the phone (hard to make and take phone calls as a teacher) and get everything dealt with.

Be prepared to go through the red tape of pre-authorization on an annual basis.  No one told me about that, and suddenly, my mail order pharmacy told me they couldn't mail out my meds because the insurance company hadn't approved it (this after a year on meds).  It's an easy matter to fill out the paperwork and have your doc's office fax it to the insurance company. . .but find out how long the pre-authorization lasts and then have the paperwork ready for the next time.

Be very, very careful about making sure that you do not have a gap in insurance coverage, because if that happens the insurance company can claim that you had a pre-existing condition, and not cover you.  Be VERY careful.

One benefit of switching, was that I actually ended up with close to a month's supply of extra pills, simply because of the timing of the switch.  Find out the time limit between ordering pills each month and order as soon as it's approved, so that you can build up an extra supply.  Very nice to have a cushion built up.  I think that you typically have to wait 20 days before calling in for your refill on a 30-day supply.

I've gone on way more than I should have.  In short, my advice is do your homework ahead of time.  Find a contact person with the new insurance carrier.  Be pushy and annoying and insistant.  You have to be your own advocate and sometimes you have to be nasty.  When I was finding myself running up against a brick wall over and over, I finally dropped the "lawsuit" word.  "If I missed medication because they wouldn't get the paperwork through in a timely fashion, they would be dealing with a lawyer".  Not sure if I'd have pursued it, but they didn't know that.  Also, at that point, I didn't know enough to know that missing a dose or two probably wasn't going to be the difference between life or death.

Good luck.  It'll be a pain, I'm sure.  Just don't be a wimp about it. . .you need to take charge even though it's a real pain in the ass.

Marnie   

[LivingWellWithCML]

This is helpful and very reassuring - thank you folks!  I started Gleevec exactly one-week ago, so I'm going to evaluate the CBC over the next two Fridays and get a recommendation from my CML specialist on whether I should proceed with getting a 3-month supply for my next purchase.  Sounds like that's the right way to build up a reserve if/when a carrier change needs to happen.

In order to get the initial Gleevec prescription filled, I had to go through some minor phone hassles, but the doc's office, pharmacy, and carrier worked really well to make it happen fast.  I started turning the wheels at 7am on a Monday morning, and I had the bottle at my doorstep at 4pm the very next day.  So even with a carrier switch, it just sounds like you have to get on top of it and make all of the pre-authorization handshakes happen as quickly as possible, and all should be good.  Yes?

Marnie - your point about the yearly pre-auth is very well taken.  You're exactly right -- my prescription is only valid for one year, so I will need to start pre-auth work as early as January 2012 before the prescription expires in April 2012.

The other thing I'm hearing is that any lapse in coverage could (or WILL) result in severe consequences - thanks for bringing that front and center.  I'm actually the CFO for my small employer, so I've made sure that our health insurance premiums are being paid ~ 2 months ahead of schedule to be safe.

This is all still so new to me and has me freaked out tremendously.  You all are saints for being so active and positive on this board!!

Dan

[MACELPatient]

Best of luck to you Dan.

I was diagnosed 13 months ago with CEL and am presently on Gleevec, 400mg daily.  My employer (7 employees total) annually goes out and finds the best plan for the company.  This happens in October every year so this past year I was anxious as well.  Prior to October we were with Tufts Health Care and changed over to Harvard Pilgrim.  I live in Massachusetts and am not aware of how the health regulations compare to other states but I did not notice any changes with my medication.  I just needed to contact the mail order Pharmacy, Curascript, to change the insurance information.  My co-pay is exactly the same.  Curascript is where I wastold to get my medicine from my insurance provider.  Gleevec falls under a Tier II out of 3 for coverage under both providers and is $30 monthly.

[LivingWellWithCML]

That's really helpful re: small business perspective ... thanks.  Did the health insurance premiums increase significantly as a result of having a CML patient on the group plan?  If so, I'd be curious what the general increase was.  For example, I'm wondering if our premium next year will double or triple (or worse??).

[Susan61]

Hi Marnie: So sorry you had all this trouble with the insurance switch.  I never had a problem, but you are absolutely right.  Always check things out no matter if its the company switching, or your switching jobs etc.

     You can see what happened to us with the COBRA expense, but with all our changes we never had a problem with pre-existing conditions or pharmacy issues.  I guess I was lucky in that respect.  My big worry is when my husband retires and we are both on Medicare.  I have heard that is a real nightmare on them paying.

    Everyone should do their homework, and always get the names of who you spoke to.  This way if anything gets messed up, you have a name to throw back at them so they know you did make phone calls.

Susan 61

[Marnie]

The pre-auth didn't actually take all that long  the 3rd time around.  Once I realized it had expired, I got the paperwork taken care of within about a week, I think.  BUT. . .I sure wish I'd have known that it was going to expire.  I have it on my calendar for mid-November, since mine will expire again in December.  My insurance company has the form online, so it's just a matter of downloading it, bringing it to my onc to fill out, and having the doc's office fax it to the insurance company.  That said. . after those steps, I was on the phone almost every day just making sure that the paperwork was moving along.  My initial experience with changing ins companies was so awful that I don't leave anything up to chance any more.

90-day supply is SO much more convenient than 30-day.  It also typically saves money on the copay.  My husband and I spend a lot of time on the road in the summer, so having to deal with ordering refills and then being home when they arrive is a big deal for me.  Since I've switched to Sprycel, I'm still getting the timing worked out so that my refills will correspond to summer vacation (I'm a teacher).

P.S.  for anyone out there on Sprycel, if you aren't aware of the Sprycel Copay Support Program through Bristol-Meyer-Squib, you might want to check into it.  It will save me $600 a year.

Marnie

[MACELPatient]

Premium went up about $25 bi-weekly and indiv. deductible went up from $1000 to $1500.  I did ask about my impact on the plan and they said it did not.  The one that did impact the overall plan cost was the increase in age.  No one in the company is under the age of 30.  They sought out the best plan they could and did give us an option for the lower deductible but that would have cost more up front with the premium.  I had to weigh that given my condition and went with what I thought was the lesser of the 2 evils.  My wife and daughter are on the plan as well just as a side-note.

[LivingWellWithCML]

Ah, that's really helpful - thank you.  If my small employer stays with our current carrier, I imagine that we'll see an increase next year, but perhaps it won't be a crazy 2x or 3x.  We'll cross that bridge when we get there...

[Girla]

what a scary story. It is also worth it to tell these people (ins. company) that you will contact the State Insurance Board of Colorado or Texas or wherever and file a formal complaint. They do NOT want that to happen. You might go ahead and find out the contact people in that agency just in case. I had to do this when My husband was ill.